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FARAFARA Cure FA

Noelle Bouchard

NoelleB1Name: Noelle Bouchard

Age: 28

Where do you call home? Maine

Education (degree(s): I graduated high school in 2006. I started college in 2012 and I am still attending. I am going part time, so it is going to take me a little bit longer. For the first two years I was it going for general studies, but recently I have decided to go for behavioral health.

What is your relationship status? Who do you live with? I have had a few long term, serious relationships while having FA. But right now I am single, and I live in an apartment under my mom, dad, two dogs, and my sister Allison. I also have a pet rat in my apartment with me. And no, she does not run loose, she lives in a cage. ;) 


What's a typical day for you? My daily routine right now is a little screwed because I am recovering from the spinal fusion that I had last month. But my daily routine when I went to school was my friend (and PCA) came over in the morning and hung out with me while I got ready for school and then we would leave in her car to go to school. I would go to my two classes and then my mother would pick me up after. Usually when I got home I would hang out with my sister Allison or do homework.

How long have you known you are living with FA? I was diagnosed in 2002-2003 and I was 15-16.

Are there any others with FA in your family? My sister Allison who is 21, has FA.

NoelleB2Describe your transition from walking to walker/wheelchair. My transition was basically get through high school with the help of teachers or boyfriends to walk with, and to use a wheelchair when I was graduated, which I did. I felt more independent when I started using a wheelchair rather than walking with help, though.

What do you like to do to stay active and what type of exercises work for you to stay strong? I go to physical therapy whenever my insurance gives me appointments. Besides that, I do go to a local gym which has a machine for people who are in a wheelchair or exercise sitting down.

What is a good trick to make daily life easier? I would definitely say my trick to make life easier would be humor. Always laugh at yourself and never take things so seriously.

When FA gets you down, what do you think/do to feel better? Honestly, if I feel like I have to cry, I let myself cry. I don't usually bottle up how I feel because that never amounts to anything good. I'm not afraid to say that I get emotional about FA because I know we all have before.

What is one way living with FA has POSITIVELY affected your life? I feel like having this disease has helped me not to take life seriously. It has also made me more aware of my surroundings and also have more patience.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? To take it slow, being knowledgeable about the disease, and don't be afraid to admit that you need help.

"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? First off, I don't like that saying. I personally feel like it is a saying people use to minimize disabled folks and their everyday accomplishments. It plays into the idea that having a disability is inherently negative and able-bodies are the ultimate goal. I try not to look at things in that way.

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About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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